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Finding Your Community

Finding Your Community
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Published on January 17, 2020

With a rare cancer like mantle cell lymphoma, it’s unlikely that someone who is diagnosed will already know someone else who has the disease. It’s also unlikely that anyone in their circle of family and friends will know someone else who has the disease. The numbers just aren’t there. Fortunately, however, thanks to the power of the Internet, patients facing an MCL diagnosis can find others to talk to, to compare experiences with, to discuss treatment strategies, to offer a virtual hug, and more. Even if a patient has the best doctors and care partners in the world, connecting with others who have heard the words and felt the fear of a cancer diagnosis is a critical part of navigating this unfamiliar territory.

If you or a loved one has been diagnosed with MCL and not yet found your tribe, the following is a list of online communities to help you get started. Click the links, read the descriptions, and see if there are any communities that sound like they might be a good fit for you. This is not an exhaustive list. So if you find another community to join and think we should add it here, please email the information to mcl@patientpower.info.

Mantle Cell Lymphoma Online Resources

 

Mantle Cell Lymphoma Mailing List—Association of Cancer Online Resources (ACOR)

ACOR.org MCL List

Facebook Groups

Mantle Cell Lymphoma Support

Mantle Cell Lymphoma: The Journey

Mantle Cell Lymphoma: Alive and Kicking!

MCL Watch and Wait

Mantle Cell Lymphoma Support for Alternative and/or chemo approach

MCL at MDA

MCL at the James Cancer Hospital

MCL Support Group UK

MCL Warriors

Online Community for Patients and Families

Smart Patients—Mantle Cell Lymphoma

MacMillan Cancer Support—Mantle Cell Lymphoma 

For more information about the communities listed above, and for other resources, visit the Mantle Cell Lymphoma web page created and maintained by members of the ACOR MCL group. To sign up for Patient Power’s MCL e-newsletter, click here. And, for the latest news and updates, bookmark our Mantle Cell Lymphoma health center and check back often. We’re here to help you find the information and support you need, so you are equipped to make informed decisions about your health.

~Suzanne Mooney


Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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